IVIG

B had clinic and labs and all looks good although there has been a steady decline in his numbers. But that is not unusual. He will need an infusion next week of IVIg which is to boost his immune system. That does mean another trip to Sacramento but that’s okay. It might take up to 4 hours so I’ll find something to do or bring a book.

We went to a terrific coffee shop that my son recommended called Philz. Oh my, it was delicious. Like the best coffee ever. I guess it’s a San Francisco thing but there’s this one in Midtown.

Today is a gym day and then I need a few groceries like Almond milk and cream.

I’m new to Medicare and it’s already a PITA. I got a notice that my doctor visit was not covered, but it was.(????) I called and got 2 different stories from AARP and Medicare. Frustrating, to say the least, and I’m too irritated to do anything else today.

Multiple myeloma is a chronic incurable disease. When I was diagnosed in 2007, the prognosis was three to five years. Little more than a decade later, due to advances in research, the statistics have improved. Some patients persist upwards of ten years. I fall into that category: one of the lucky ones.

Chronic means it doesn’t go away. You either treat the disease or risk having it run amok. The cancer subsides with treatment, but one drags around a significant baggage of side effects.

MM is a nimble adversary. At first, there are plenty of ways to fight back. But each treatment has a finite period of effectiveness, therefore, the incurable tag. That’s how you manage multiple myeloma: you just kick cans down the road until you run out of cans …

I am an easy patient, passive as a cloud. I don’t demand or complain. I accept the discomforts: the teeter-totter of steroids, the malaise associated with most chemotherapy, and the many, many needle sticks.

Decisions, Decisions

For sixteen months, my last regimen consisted of a three drug combo that balanced disease control with side effects. It necessitated weekly visits to oncology for injections or infusions but I felt good … well, goodish. Last summer, the stability waned and toxicity from two of the drugs finally exceeded their benefits. I still had options. Nothing of what remained, however, offered a long term solution.

Myelomiacs, if they are fortunate, eventually reach this point. What, then, is the goal? They can move along and exhaust the options. Or, they can consider a clinical trial and treatments that have yet to be approved.

Decisions, decisions.

The most promising trials revolve around a groundbreaking new “living drug.” It’s called Chimeric Antigen Receptor Therapy or CAR-T. The technique involves gathering T cells (a type of immune cell) from the cancer patient’s blood, engineering them in a lab so they will recognize cancer cells as an “enemy,” then reintroducing these weaponized T cells to the patient’s body.

The “Hutch”

Nationally, there are a dozen or more clinical trials of CAR-T aimed specifically at multiple myeloma patients. Last July, my wife and I consulted with a trial administrator in Seattle.

The consensus of opinion and early trial results affirm CAR-T as a viable treatment.Nonetheless, science is a process made whole by both success and failure. There are risks. Questions remain about the optimal dosage and durability of the methodology. The time commitment averages 30-60 days away from home, more if complications occur. There is no guarantee of admission or success.

Still, hundreds seem willing to participate. For some, the trial might be a last ditch effort to buy more time. Others may have young children and hope to pre-empt the many temporary fixes with a single extraordinary treatment.

My point of no return is not imminent. My children are grown and comfortable in their own lives. And, with the can currently being kicked down the road, I am seeing a bit of a bounce back from last summer’s decline.

Zero is normal. The trend has improved since mid-summer decline.

My treatment philosophy has always been that “less is more.” Yet hope tempts one to manipulate logic. I want to believe the CAR-T product is less than the more of doing the same thing with different drugs from the FDA’s medicine cabinet. Such is the allure of hype.

Veterans of this disease face a choice: to explore, or not, the outer edge of treatment modalities via a clinical trial. Scientific research extended the life span of an entire generation of MMers. The blood of participating volunteers fueled that improvement.

Is there more to come?

CAR-T science is beautiful, a source of wonder. To genetically modify one’s immune system is unprecedented. Each recruit into these trials marches to a drum beat of hope and an echo of doubt. Their leap of faith may seem prudent given the slow pace of the regulatory process. Certainly, the wiles of multiple myeloma won’t wait. And, though disease control may not be refined, perhaps some can capture the future.

Unfortunately my levels have started to rise all of a sudden. Hard to know why – I’m hoping it’s not because of the Questran, which affects absorption. I don’t think it can be as I have it in the evening and the Revlimid in the morning. I happened to bump into my consultant when in for my Pentamidine inhalation and she suggested that I went straight back up to 25mg of Revlimid (was 15) and do a whole 4 weeks on top of the two I’ve just done – so no break. I’ll be doing a blood test though to check my counts are OK. So we’re hoping that this will kick me back down. The next step might be to add in Dex or maybe start a new drug like Pomalidomide or one of the other new ones. It’s annoying, but we’ve been here a few times before!

I immediately started to feel more fatigued and I ache quite badly, with very sore skin too. I seem to have managed to have pulled muscles on either side of my back as well, possibly overdoing the myeloma exercises I started a while ago. So I’ve been taking the odd paracetamol, though it’s not very effective. Not allowed ibruprofen type medication.

I had an issue with the Questran – my pharmacy gave me Questran light, which has aspartame in it instead of sucrose. Not only is it like drinking wallpaper paste in texture, but the wind is worse too, as is the acid. So eventually I’ve managed to get some regular, but I feel that I need to slowly use the old stuff up as it’s such a waste otherwise. I might do say a couple a week.

We had an interesting day last week. I was asked by Leicester to go and speak to camera about my Ig subcut training etc for their patient experience unit. It went well – they have a proper studio. I wanted to make some key points about the training, especially the written info, as well as the more general issue that giving people IVIG could help the hospitals, as it might stop people with low immune systems from cancer treatment getting so many infections and taking up hospital beds.

My brother has been diagnosed with bowel cancer and is due to have an op in early Jan. Looking at all the info, you realise just how different cancers are. But for all of us patients, being diagnosed will always be scary, regardless of the treatments etc.

Anyway, off for a nap now I think! If I don’t manage another entry before Xmas, have a lovely time all of you xxx

Tomorrow, we will have had my honey home from the hospital for one week. Our daughter Gale, “the nurse”, gets her Stethoscope and listens to his chest…….and she says it sounds clear. Finally, the pneumonia is gone. He’s still weak and feels bad, but she tells him it’s going to take awhile for him to recover. Just standing, to shave, makes him weak and gasping for breath.

Today, we went to the Cancer Center for his monthly appointment with his oncologist, and Dr. H verified what “our nurse” had been saying. “You were very sick, it’s going to take awhile for you to get over this.” He finished up with “You are looking good”. Dr. H can always put a smile on his face. If confidence in one’s doctor is half the battle, then we’re on our way to winning the fight!

What a long day this turned out to be! It was the day for the Zometa infusion, but because he has had pneumonia it was now necessary to begin having IVIG (immunoglobulins) infusions. The immunoglobulin is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG’s effects last between 2 weeks and 3 months. It is mainly used when the patient has had an acute infection or has a compromised immune system (as is caused by MM and the treatment thereof).

The IVIG is given in his Infusa Port, with Benadryl, Zantac, and Steroids and takes approximately 4 – 5 hours to administer. He slept much of the time during the procedure, and by the time we started toward home, near 3 p.m., the steroids had taken over …… and he talked, non-stop!

He still has terrible pains, in his legs …… those pains that are close to bringing tears. “Our nurse” has begun to give him Tylenol whenever he takes his Dilaudid, and it does seem to help. Dr. H also agreed it was a good idea as long as he doesn’t receive more than 4 grams (4,000 mg), per day.

We know that it’s getting close to time for “our nurse” to get back to her home, and her family (just as our TX daughter had to do), and I’m dreading that time. How lucky we are. I thank the Good Lord, everyday, for these two special daughters. They are my strength. How lucky we are.

I went for my follow up today after being told by my Haematologist last week, that she was 80% sure my MGUS had turned to myeloma and that I may need to start chemo. My Haemo had a video conference with a big UK cancer specialist hospital, with several myeloma specialists in attendance. STILL they are not sure whether I need chemo, some said I did and some disagreed, in the end they told my haemo it was back to her to decide the best course of action for me. I am such a difficult case that no one seems to know what is going on. I asked for a diagnosis and my Haemo says I now have smouldering myeloma.

My latest results are the same as the ones from a week ago

Bone Marrow Plasma 25%

IGg paraprotein 44.8 (UK) 4480 (US)

IGM is too low

IGA is too low

I have hypogammaglobulinaemia

All other bloods and urine are fine

B2 microglobulin is being tested

Blood viscosity is being tested

Blood and urine taken again today dont know when I will get the results.

I forgot to ask for the results of my MRI which was done on Tuesday4th March.

Due to my recurrent infections my Haemo suggested to the panel of specialists that I may benefit from Immunoglobulin transfusion, some of the panel said it could work and others disagreed, but my Haemo has said it wouldn’t hurt to try it. I have now been signed over to the care of the cancer unit (Macmillan Unit) at my hospital, rather than the Haemo department. I Have to attend on Wednesday 12th March at 09:00 for my first transfusion of SANDOGLOBULIN, it will take allday as if it is done too fast there is a risk of blood clots and/or allergic reaction. If my blood is already to thick/viscous then I wont be able to have the transfusion until my blood is thinned out. Sandoglobulin is basically a mixture of Immunoglobulins from a variety of blood donors, its heated and dried to help remove any viruses such as HIV and Hep C and then it is mixed with saline and hooked up to an IV drip. I have agreed to try the treatment but I am obviously worried, but its got to be better than starting chemo.